I just need to vent for a minute. Get some things off my chest. I know many of you will appreciate this post because Spina Bifida probably gets on your nerves too. I just wish SB didn't affect EVERYTHING! It would be nice if it just picked one thing to mess with and leave everything else alone. I can handle the leg braces, the walker, and the wheelchair. Caleb's physical limitations are the least of my concerns. No big deal. As far as I'm concerned if SB only affected mobility then it would be easy breezy. As Caleb has gotten older the mobility issues just don't bother me like they used to. I feel for all the parents out there with babies and really young kids, I know that their number one question is: "Will my child ever walk?" Walking seems to be the thing we get stuck on and the thing that matters so much to us. I know. I've been there. I used to wonder and stress over Caleb's lack of mobility. But the truth is, I am SO happy with Caleb's progress. I'm tickled that he is able to walk with his AFO's and walker. I don't mind that he needs his wheelchair to go longer distances. Will life be a little bit more difficult for him because he can't get around like everyone else? Yes. But it's manageable, and he will live independently, he will learn how to navigate and make it work. I'm not too worried about that.
What I am noticing more and more as Caleb has gotten older is the neurological impact SB has. We tend to focus on the physical aspect of things because that is what is most obvious. We see the leg braces, the walker and the wheelchair. We can't see the neurological issues just by looking at him. But they are there...and they drive me CRAZY! What is even more maddening is trying to decipher what is a neurological issue and what is just Caleb's quirks.
Routines: Caleb is all about routine and doing things the same every time. In the living room he wants his walker touching the center of the couch before he will get into it. He wants Veggie Tales playing in the car when we back out of the driveway. He has actually asked me to start our drive over because he forgot to ask for Veggie Tales before we backed out of the driveway ( I refused ). He wants to "start over" if things aren't exactly right the first time. He will erase something over and over and over until it is just right. I finally cut the eraser off of his pencil because he couldn't get his homework done, he was spending all of his time erasing. It's seems a little OCD (but maybe we are all a little OCD).
School: Since starting Kindergarten I have seen some things. He has trouble focusing on his work at school, he doesn't always finish it. I'm not sure if this is a neurological issue or if it is simply the fact that he is barely 5 years old and he has some maturing to do.
Sometimes he has trouble writing the letter/number he says he is going to write. He will say: "I'm going to write an 8" but he will write a 3 instead. And he will immediately realize he wrote the wrong number. It's like his hand and his brain aren't working together.
He is super sensitive to loud noises. Now this is nothing new, and truthfully it has gotten MUCH better as he has gotten older. I know this sensitivity is due to hydrocephalus, it's not anything that he can help. He gets so anxious when he thinks he might be going somewhere that will be loud. His class is taking a field trip soon to see a play and he is already very worried that is is going to be loud. He is way to young to have such anxiety.
It's mind boggling the things that SB affects. Caleb's brain is just different, it looks different, and it works different. Not to say that he isn't intelligent, because he is very bright. He is a super smart kid. His brain is just different. I see this more and more these days.
He saw his neurosurgeon today and I requested a Neuropsycological evaluation for Caleb. It looks like he will be having that done at the beginning of next year. Here is what that testing will show us:
Neuropsychological testing is a procedure that measures and identifies cognitive impairment and functioning in individuals. It provides quantifiable data about the following aspects of cognition:
Short-term and long-term memory
Ability to learn new skills and solve problems
Attention, concentration, and distractibility
Logical and abstract reasoning functions
Ability to understand and express language
Visual-spatial organization Visual-motor coordination
Planning, synthesizing and organizing abilities
All of the areas tested are very common issues in kids with SB. This test will really help us understand Caleb better and how his brain works. This will also help us when it comes to his education and how he is functioning at school. I'm really excited about getting this evaluation done. I think it will give us invaluable information.
Here is something I discovered this weekend. Caleb has been congested so I was giving him some OTC expectorant (guaifenesin). Well yesterday he was acting super weird. He seemed kinda confused, a little slow, couldn't make decisions. It was really freaking me out. We were about ready to take him to the ER and then Glenn mentioned the medicine I was giving him. So, I did a quick search on the internet and found several articles that said "guaifenesin" can affect the central nervous system, and it can have some neurological side effects!! Since Caleb has neurological issues, it is likely that this simple OTC medicine was having a huge impact on his system. I stopped the medicine and he was better within hours. Just an FYI for you SB parents out there. I don't give Caleb decongestants because I have seen them affect him but I never thought that expectorant would. Now I know, and he will not get that medicine again!
There, I feel better now. SB just gets on my nerves people! And I just wrote about the neurological issues...don't get me started on the bladder and bowels!! Good grief.
All this being said...I love that little booger to pieces. He makes my heart smile and I can't imagine this world without him, not even for a second.
Fellow SB parents...What drives you crazy about SB? Feel free to vent your frustrations!